help get XMRV on Oprah

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Senior Member

agree...new yorker or atlantic monthly...then we could see some in depth reporting....shows like dr oz and oprah have mass appeal but just brush over the details in order to keep it entertaining/engaging for mass market....the disease is complex it takes more than 5-10 minutes or a 1 page article to really discuss it.

i like dr. donnica as a media rep ...she's got it all: mass market appeal and sharp as a tack delivery to really delve into the seriousness of this disease.

Senior Member

I'd be more than happy to contact Rachel Maddow and Keith Olbermann - especially Keith right now as his father is very sick and he has demonstrated some real understanding of the health system in this country. He recently started a fund-raising drive for clinics for the uninsured and threw in a good chunk of his own money.

The only thing is, I don't really know who to suggest they contact. Any suggestions as to who might best be able to put the political aspects of CFS ... or more precisely, lack of them?

happy to be here

I'd be more than happy to contact Rachel Maddow and Keith Olbermann - especially Keith right now as his father is very sick and he has demonstrated some real understanding of the health system in this country. He recently started a fund-raising drive for clinics for the uninsured and threw in a good chunk of his own money.

The only thing is, I don't really know who to suggest they contact. Any suggestions as to who might best be able to put the political aspects of CFS ... or more precisely, lack of them?

Senior Member

Personally, I would love to see Malcolm Gladwell of the New Yorker Magazine do a piece on this. The story of WPI and XMRV fits beautifully into the premises of Gladwell's hugely popular books:

eg: The Tipping Point - how a new idea catches, then spreads like wildfire; how the WPI and team's XMRV findings have hit a nerve - and resulted in a global wave of interest, including popular media (eg. feature on Dr Oz Show within 2 months of the research coming out).

"Blink" - the power of first impressions - and the DANGER of confusing intuition with cultural/gender bias (eg. "whiny, out-of-shape, middle-aged female patients" summarily dismissed as hypochondriacs when in fact they may have a cancer-causing retrovirus!)

How is it, that after being dismissed by dozens of specialists and countless "tests" over the course of a decade, when I sent a 1-page graph of my symptoms to a world-renowned cardiologist at the Mayo Clinic, he immediately recognized my textbook diagnosis and called me 5 minutes later to discuss it? This is so reminiscent of the art expert in Blink who took one look at a painting that had received scores of detailed "expert" analytics that it was authentic - and in the blink of an eye, made an accurate pronouncement on its authenticity. There are two dynamics here - one: physicians who make an instant "blink" decision that confuses cultural bias and groupthink with intuition; and two: physicians who rely on routine, in-the-box tests, not their intuition, which results in the pandemic misdiagnosis of millions of North American patients with ME/CFS as "hypochondriacs". As Jerome Groupman of the book "How Doctors Think" comments,

"If you listen to the patient, he is telling you the diagnosis."​

Listen, indeed. How has medicine become so slavishly devoted to in-the-box medical tests that it has systemically and internationally missed a more prevalent retrovirus than HIV? How have crystal-clear clinical histories been so pandemically ignored?

I suspect that Gladwell might also be interested in the dynamic of "Narcissistic Personality Disorder", and how this might play into the endemic perpetuation of medical misdiagnosis in our patient community. Look at a class of med students, and you will see profound self-selection in personality types. In fact, research has found that narcissistic personality disorder (eg. "God complex", never being "wrong") is more prevalent in physicians than in the general population. What a culture of medical innovation so desperately needs is intellectual humility (a la Michaelangelo, who famously said, "I am still learning"), instead we are saddled with a med school selection process that inadvertently favors narcissists.

Gladwell writes stories that people read - he has tremendous mass appeal - in an intelligent, thoughtful way. I think he might be personally fascinated with the whole culture of how doctors make decisions based on pseudo-intuition that for the ME/CFS patient community have been disastrous. How can a profession that is ostensibly based on "science", be so horrendously trapped in non-science-based groupthink? I really think this topic could really get Gladwell's intuitive and creative juices going.

Senior Member

Re: Oprah - I totally agree with emphasis on the story. If ever there was an embodiment of the American spirit of innovation, and triumph over relentless adversity, THIS is it!

WPI is a poster child for Obama's invocation, "YES, WE CAN!".

The fact that this issue also speaks to the endemic dismissal of women's health concerns (and yes, millions of men are affected too - I'm just speaking to the sex ratio), might really appeal to Oprah's sense of justice.

Annette Whittemore's overt caring for the global ME/CFS community also embodies the spirit of global compassion that Americans have been known for. This is a real renaissance, not to mention great-news (assuming study replication is forthcoming) to celebrate! But there is every indication that WPI has cracked this nut.

Now that Oprah's contract has an endpoint, she can speak more to her heart. This is an EXCELLENT Oprah story!

Senior Member

I will write to both Olbermann and Maddow with a brief history, bringing in the way AIDS was viewed until people started becoming militant and comparing it to the way the CDC - and many doctors have treated us. I will politely ask that they consider taking up this story in light of the WPI's findings, and if there is any interest, I will refer them to people who can address the issues better than I can. Wish me luck, as I wish everyone else luck. We NEED to become more militant, getting the news out whenever and wherever we can. I've had enough of my PWC brothers and sisters suffering endlessly and needlessly. I feel ashamed that I dropped the ball during a prolonged almost remission, but getting involved with this forum has really put me in campaign mode.

@loldershaw: You're right that it would be great to have Plan B in place. Any ideas?

Thanks again, everyone, for being willing to put yourselves out there. It's not easy to remain hopeful, brave, and tenacious after all we've been through - but y'all are doing it. Let's make something happen.

mvwu

Guest

These are great ideas. I'd like to add one more: PBS's FRONTLINE. I can imagine FRONTLINE doing a compelling documentary on the CDC's failure with CFS, especially if the XMRV association pans out in the upcoming replication studies.

They did a documentary on Parkinson’s in February:

“In 2004, journalist Dave Iverson received the same news that had been delivered to his father and older brother years earlier: He had Parkinson's disease, a degenerative neurological disorder that affects about one million Americans. In a FRONTLINE and ITVS joint production, Iverson sets off on a personal journey to explore the scientific, ethical and political debates that surround Parkinson's, a disease at the center of the ongoing controversy over embryonic stem cell research. Iverson talks to scientists on the cutting edge of new cures and therapies for Parkinson's as well as a number of other major neurological conditions. And he has intimate conversations with fellow Parkinson's sufferers like actor Michael J. Fox and writer Michael Kinsley. Producer(s): Dave Iverson Michael Schwarz”

From FRONTLINE'S website:
"Since its inception, FRONTLINE has never shied away from tough, controversial issues or complex stories. In an age of anchor celebrities and snappy sound bites, FRONTLINE remains committed to providing a primetime venue for engaging documentaries that fully explore and illuminate the critical issues of our times. FRONTLINE remains the only regularly scheduled long-form public affairs documentary series on American television, producing more hours of documentary programming than all the commercial networks combined."

If they like “tough, controversial”, and “complex,” I'd say the story of the US government spending nearly a quarter century dismissing a spreading, cancer-associated retroviral disease as a neurosis might interest them.

happy to be here

It seems to me that some news outlets, like Frontline, could be interested precisely *because* we don't know how it's going to turn out, so there's some suspense - which makes it a great story.

Also, when we all have such well-founded doubts that the replication studies will be done in good faith, given the CDC/Reeves history, I think that NOW is the time we need to draw attention - if the CDC doesn't know that the public is watching very, very closely, god knows what they'll come up with.

happy to be here

Hey y'all, some pretty interesting news re this thread, though not re Oprah. I received a very friendly note back from Jerome Groopman, who writes on medical topics for the New Yorker. He said, get this, he has already been thinking about writing on XMRV & CFS, because he knows Frank Ruscetti (NCI) who was one of the co-authors on the study! They worked together back in the early HIV days! Soooo I tried to give him a few thoughts on angles (while feeling totally embarrassed and out of my league), and I think he's kinda waiting for more news, but that may well be in the pipeline. Yay!

happy to be here

Another note from Jerome G. What a nice man! He has talked about this topic with the editors at the New Yorker!!! They want him to wait for more news, but I think when it comes he might really write about it. More yays!

ps @DB - Nothing from Annette W, huh? Maybe give it another week and then rethink?

Senior Member

Great news fresh eyes about the New Yorker - thanks and congrats for your effort!! What a fortuity that Jerome G. knows the NCI guy and that he's interested in the topic.

I actually think it's just as valuable that this topic caught his attention now, even if it may take time for the project to bear fruit with the magazine wanting him to wait for more news. The fact is is that it's in the mind of a New Yorker writer, and an in-depth article reflecting more news (CFS and XMRV will still be here for the foreseeable future) is likely to carry more credibility with its audience (which includes skeptical doctors who treat "prestigious" career-building diseases and other know-it-all professionals and intellectuals).

work in progress

I just received an email back from a contact of Annette Whittemore's, regarding a note I dropped to her about pitching an idea for a segment on CFS/XMRV for the Oprah show. Here's what she had to say:

"Thank you so much for sending the email to us. The idea for having a segment of the Oprah show on CFS has been on our radar. As I am sure you are aware you only get one chance with Oprah to pitch your story. There are many things in the works for this year that would complete a story we believe Oprah would be interested in. Until these things come to fruition we will wait. Our advertising and PR agency would pitch the story on our behalf.

Again I thank you for providing an idea to help create awareness for CFS and the research that is currently being done to find answers."

Senior Member

I wrote to eveyone.....Dr. Phil, Oprah, and Dr. Oz in the past and present. My first contact was with Oprah back in 2007. I touted Dr. Teitelbaum, as he was the only one I knew at the time. I assumed he had all the answers and following his protocol would get me back to health in no time. Since I had a heart attack as the result of going to Dr. Teitelbaum's Fibro and Fatigue Center in Pittsburgh, I personally feel that finding help with this illness is especially important. ( Not just for my trouble, but for everyone's difficulty ) With facilities, such as the Fibro and Fatigue Center doing dangerous protocol and putting me in severe cardiac heart failure, I am all for getting publicity concerning this illness. I contacted Dr. Teitelbaum when I learned another member of this group suffered atrial fibrillation a year before I was sent into a heart attack and they didn't change their protocol. He told me that they use high doses of T3 therapy from Dr. John Lowe's fibromyalgia therapy. Unfortunately, I never had fibromyalgia. Does anyone else see a problem with this way of thinkin gother than myself????

Senior Member

An article in The New Yorker would be wonderful help! I remember what a great job they did with the article on Laura Hillenbrand's experience of illness (the author of Seabiscuit for those who don't recall). I can understand how it would be best for the next chapter to start unfolding before they do it. This won't be long!